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Chronic Disease, Men's Health, Patient Care

Looking for comfort during a less-than-comfortable diagnosis

Looking for comfort during a less-than-comfortable diagnosis

We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often rare diseases share their unique stories; the latest comes from patient advocate Stan Hardin.

Society teaches us that men are the “tough” ones. Men don’t want to be considered weak, or unhealthy – which is one reason they don’t see their physicians as often as they should.

Ten years ago this past July, when I was 44, I had to overcome my own inhibitions of visiting the doctor I had seen for regular checkups over the years. Those visits were always standard – that is, except for the dreaded “turn your head and cough” moment, when things became uncomfortable for me. So this appointment, during which I was there for the doctor to examine my penis, was a difficult one.

I wound up being diagnosed with Peyronie’s disease, a condition characterized by the formation of fibrous tissue plaques within the tunica albuginea, usually causing a penile deformity and subsequent erectile dysfunction.

My general physician referred me to an experienced urologist who was trained in treating PD. His expertise went further than just treating me physically. He actually took time to sit and talk with me, and his attention on how PD would affect me psychologically and emotionally made all the difference to my being able to cope.

In 2002, with the Internet still in its infancy, there was nothing available online about PD to help me. So I created my own site and, eventually, a nonprofit advocacy organization. With exposure on the Internet came connections with other men suffering from PD, and through this communication I have made several interesting observations.

What stood out most prominently was the men feeling that male physicians themselves were uncomfortable talking to men with PD. Since this is already an awkward situation, any physician who appears this way will make his patients that much more uncomfortable. I believe that the “turn your head and cough” moment resides within the experience of men with PD much more profoundly.

There is also a general feeling of helplessness about this disorder, as evident by two patient comments on our site:

I’m 31, married and too young for PD, I’ve had it for 2 ½ years. The urologist told me to take Vitamin E and that there is no treatment; he scheduled me for a follow up appointment. I never went, what’s the point?

And:

I have had PD for two years… My doctor sent me to a specialist, who told me that if I had been looking at PD on the internet, that I knew more about the disease than he did… I am 57 years old and very surprised at the dismal options for real help out there!

It’s clear to me that any physician who examines a man with PD – and with any “below the waist” disorder – needs to be aware of, and sensitive to, the patient’s uneasiness about being examined and being diagnosed with this type of disease. The importance of communication cannot be overstated.

I now know how fortunate I was to have a urologist who understood the complexity that surrounds a diagnosis of PD, and who came to my level and made me feel comfortable with the disease and talking about it. Even after a diagnosis of PD, I can proudly proclaim that I am still a man – and also an active participant in my health care.

Stan Hardin, of Colorado Springs, Colorado is founder and president of Association of Peyronie’s Disease Advocates, a nonprofit organization dedicated to the education and awareness about PD, The clinical information from the APDA is overseen by some of the most renowned urologists who research Peyronie’s disease and treat men with PD.

11 Responses to “ Looking for comfort during a less-than-comfortable diagnosis ”

  1. Itzhak Brook MD Says:

    Unfortunately many physicians eel uncomfortable to examine intimate body parts. This can lead to devastating consequences-such as missing prostatic, rectal, breast, and ovarian cancer. It is often up to the patient to “demand” to be fully examined.

    Itzhak Brook MD
    Blog site: http://dribrook.blogspot.com/

  2. Nancy Finn Says:

    Just wondering if you know about the Society for Participatory Medicine. We are a group of individuals and providers who deeply believe in the importance of patient empowerment, engagement and the patient/physician partnership. We encourage collaboration and education among patients and teams of providers and publish the Journal of Participatory Medicine which is online and available. You can find out more about the Society at http://www.participatorymedicine.org.

  3. D. S. Stadtfeld Says:

    Thank you very much. Once physician and patient are comfortable with their discussions and examinations, what actually seems to help?

  4. Carmen Gonzalez Says:

    Stan,

    Thanks for sharing a very common account among patients with PD. It is only through greater awareness that physicians can be encouraged to provide patient-centered care. You are an alpha patient in being among the pioneers demanding better care. Keep speaking out.

    Best regards,
    Carmen

  5. Sean Dawson Says:

    Hello Again Stan:

    We have been in contact over the years and your ongoing efforts are more than appreciated.

    Please if you wish, share my email address. As we all know, this is a very lonely disease.

    I just made an appointment with my MD to take a look at the plaque that is growing at an alarming rate in the palms of my hands.

    Again, this is a great venue.

    Cheers!

    Sean
    Sean!

  6. Stan Hardin Says:

    Thank you all for your kind comments!…..
    Dr. Brook – Thank you for noticing and mentioning the VERY point I was endeavoring to make.
    Ms. Finn – We, as an organization will be in contact very soon. It has been our belief from the onset that working together with the medical community is the answer to better care.

    D. S. Stadtfeld – Unfortunately, not much helps! It seems what works for one man does not work for another. Very little is understood for this enigmatic condition. Surgery, sadly, becomes the “Gold Standard” of treatment…..I hate that term!

    Carmen – Thank you for your encouragement. I feel that awareness is the key to education, for both the public and the medical community.

  7. Stan Hardin Says:

    Hello Sean – Great to hear from you, I will be contacting you in the short term. It is not surprising that you are showing signs of Dupuytrens Contracture since it is estimated that up to 30% of Peyronie’s patients also have it as well. Fortunately you have an option with a new drug called Xiaflex, which has been approved by the FDA. Ask your Ortho about it and demand its use over surgery!
    Talk soon!

  8. Angelika Says:

    Kudos to you, Stan, for speaking up!

    I’ve heard about some men having a “crooked penis” but I had no idea what it was about. I can imagine your embarrassment at having to expose such a private part of your anatomy when something’s amiss, but I’m surprised that even a male urologist might be uncomfortable talking to other males about a male problem.

    I found that repeated exposure to initially embarrassing talks made it easier, but I have to admit it was always my doctor who took the lead. If I’m too shy to talk openly about my problem, I worry that I’m jeopardizing my treatment by withholding information. I can’t know which details might be pertinent if the doctor doesn’t question me thoroughly.

    Perhaps the dehumanizing clinical setting is part of the problem. Might it be easier to discuss our intimate health issues in a comfortably furnished office before heading to a sterile exam room?

    -Angelika

  9. Stan Hardin Says:

    Thank you Angelika!

    The vast majority of Urologists are “not” uncomfortable, after all it is the specialty they selected. You make a good point with regards to the clinical setting. That can be overcome with a openly communicative physician and staff. Comfort begins at the front desk and continues with each consecutive visit. Thank you again!!

    Stan

  10. Sam Says:

    Stan
    I have had peyronies disease for about 10 years now. I am looking for someone in the San Francisco area that may know what they are talking about with this disease. I have severe Dupuytren’s, Lederhause (sp) in my feet for the same period of time.
    My hand was surgically corrected but of course they know nothing about the feet or penis issues.
    I finally have a doc for my feet in Seattle that can correct that issue. Now for the peyronie’s to be corrected.
    Years ago I had a Dr in San Diego give me verapamil injections and they helped a bit, however it has never been rectified.
    Please let me know what or who you know in the San Francisco area that could possibly be of assistance.
    Thanks
    Sam

  11. Stan Hardin Says:

    Sam there is a very good Urologist in San Francisco who seems to be on the cutting edge of treatment for Peyronie’s. His name is Dr Lue, his contact information follows:
    Dr. Tom Lue
    Department of Urology, UCSF
    400 Parnassus Avenue, A633
    San Francisco, CA 94143-0738
    Tel: (415) 476-1611
    Fax: (415) 476-8849

    Another physician to see is:
    Dr. Ira Sharlip
    Pan Pacific Urological/Surgical Associates
    2100 Webster Street #222
    San Francisco, CA 04115-2376
    Tel: (415) 202-0250

    Good luck and let me know how you do!

    Stan

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